Slideshare uses cookies to improve functionality and performance, and to provide you with relevant advertising. If you continue browsing the site, you agree to the use of cookies on this website. See our User Agreement and Privacy Policy.

Slideshare uses cookies to improve functionality and performance, and to provide you with relevant advertising. If you continue browsing the site, you agree to the use of cookies on this website. See our Privacy Policy and User Agreement for details.

Support Without Borders: The Ovarian Cancer Online Community

Inspire CEO Brian Loew presents online research data to the national conference of the Ovarian Cancer Research Fund Alliance (OCRFA), an Inspire partner. The conference session took place July 10, 2016, in Washington, DC.

Support Without Borders: The Ovarian Cancer Online Community

1.
THIS DOCUMENT IS CONFIDENTIAL PAGE 1
Support Without Borders
The Ovarian Cancer Online Community
OCRFA.inspire.com
Brian Loew
CEO, Inspire
July 10, 2016

2.
THIS DOCUMENT IS CONFIDENTIAL PAGE 2
Social media and health…some numbers
of internet users say they looked
online for health information within the
past year
(Source: Pew Research Center)
• The most commonly-researched topics
are specific diseases or conditions;
treatments or procedures; and doctors
or other health professionals
• 50% of health information research is
on behalf of someone else
of consumers say that information
found via social media affects the way
they deal with their health
(Source: Mediabistro)
72%
40%

3.
THIS DOCUMENT IS CONFIDENTIAL PAGE 3
Connected Patients Tend to See Better Outcomes
A growing body of scientific and anecdotal evidence supports our
belief that patients who have the skills and confidence to become
actively engaged in their healthcare have better health outcomes
and experiences.

4.
THIS DOCUMENT IS CONFIDENTIAL PAGE 4
Healthcare is
becoming more
consumer driven
& patients are playing
more of a role in their
health
Patients are
increasing
technology use
in relation to their
health
Social media
is situated to be
a key way
to engage with patients
and opportunity to offer
them a personalized
experience
Patient centricity and social media

5.
THIS DOCUMENT IS CONFIDENTIAL PAGE 5
Inspire overview
• Leading social network for health that connects patients and caregivers in a safe,
permission-based manner.
• 200+ support groups for people affected by many different conditions including cancer,
rare diseases, and many others.
• About 65% of members are patients and about 30% are caregivers.
Started
in 2005
100
patient
advocacy
partners
800,000+
members
2,000,000
reported
medical
conditions
8,000,000
posts

6.
THIS DOCUMENT IS CONFIDENTIAL PAGE 6
Support without Borders
• Inspire members can
connect with other
members in cities
and states across the
nation and globe 24
hours a day, seven
days a week
• Inspire helps members
with fewer resources,
whether due to geography,
socio-economic, or other
reasons, to obtain health
information that is
otherwise difficult to find
• Inspire can help
reduce the feeling of
isolation that many
people feel when
facing cancer and
other diseases

7.
THIS DOCUMENT IS CONFIDENTIAL PAGE 7
• 275,000 members with or affected by cancer
• 36 cancer-related groups on Inspire
• 350+ million words written by members of cancer
support groups on Inspire
Inspire Cancer Community
cancer.inspire.com/engage

8.
THIS DOCUMENT IS CONFIDENTIAL PAGE 8
Insights from Inspire’s 2nd annual member survey
• 10,150 inspire members completed the survey
• 41% of survey respondents are affiliated with one of our cancer communities
• Cancer was the most represented therapeutic category among all survey respondents
• Nearly 90% of survey respondents reported using social media
• About 40% of respondents belonging to one of our cancer communities reported asking
for or receiving healthcare-related advice on social media
• Respondents most often seek advice on treatment options, and the advice they get tends to
influence their healthcare decisions
• 40% of respondents who belong to a cancer community confirmed that they offer health-
related advice on social media

9.
THIS DOCUMENT IS CONFIDENTIAL PAGE 9
OCRFA Online Support Community
• Launched in 2007, now with over 30,000
members
• Since that time the group has had nearly
684,000 posts
• Members learn about:
• Learn about the latest treatments and clinical
trials
• Get tips for managing their disease
• Share emotional support with others who
understand
• Help each other advocate for the best care
possible

10.
THIS DOCUMENT IS CONFIDENTIAL PAGE 10
The Depth of Healthcare Social Networks
• The average number of characters per
post on Inspire is over 16 times as high as
the most common post length on
Facebook, and almost 11 times as high as
on Google+.
0
400
800
1200
1600
2000
Inspire Posts Facebook Posts Google+ Posts Inspire
Comments

11.
THIS DOCUMENT IS CONFIDENTIAL PAGE 11
Teal Sister Discussions
• There have been nearly 95,000 posts in
the Ovarian Cancer Community in the last
year
Topics New Discussions
Treatment 936
Recurrence 753
Side effects of treatment 680
What, me worry? 398
Help desk 363
Newly diagnosed 302
Research 273

12.
THIS DOCUMENT IS CONFIDENTIAL PAGE 12
Connecting with Other Members
• Inspire members can search for other members by zip code, age, state and gender
Explore members in
This community
Gender
Members near you Age

14.
THIS DOCUMENT IS CONFIDENTIAL PAGE 14
Sisterhood
“It really hit me today how much all of you mean to me. To be able
to get on this site every night while I'm laying in bed before sleep
has become a habit and one I have come to depend on very
much…You all have taught me so much. Not only about this
disease…but how to handle my chemo, what to pack for the
hospital visit, anything and everything I’ve asked of you, you have
come back and given me a valuable answer….But most of all, I feel
a sense of Sisterhood.”

16.
THIS DOCUMENT IS CONFIDENTIAL PAGE 16
Ovarian Cancer Patient/Caregiver Experience Survey
Background
• Purpose: To bring the perspectives of those with Ovarian
Cancer and their caregivers to life on a large scale.
• Launch: After about a month of planning and coordination
with the Ovarian Cancer Research Fund Alliance, Inspire
sent invitation emails to members of the Ovarian Cancer
National Alliance Support community.
• Fielding: The survey was available for members to take
from May 4th – 27th.
• Impact: During the nearly three week period in which the
survey was available, 492 Inspire members completed the
assessment.

19.
THIS DOCUMENT IS CONFIDENTIAL PAGE 19
Clinical Trial Participation
• Roughly 1/4th of respondents reported participating in a clinical trial for ovarian cancer – these patients
primarily learned about the trial from their doctor/treatment center
• Only a relatively small amount of patients learned about the trial from online/other sources
24%
75%
1%
Yes No Don't know/Not sure
13%
14%
14%
22%
36%
0% 20% 40% 60% 80% 100%
Not sure/don't know a lot
about clinical trials
Wanted to participate but
couldn't get into a…
Didn't know that enrolling
in a clinical trial was an…
Other
Didn't need or want to be
in a clinical trial
Reasons why not in trial

20.
THIS DOCUMENT IS CONFIDENTIAL PAGE 20
Perceived Impact of Ovarian Cancer on Patients
• There is a difference in patient and caregiver perception of the impact of ovarian cancer on
patients’ lives; interestingly, but not surprisingly, caregivers feel there is a greater impact
on their loved one than those with the disease
On a scale of 1 to 7, the
average perceived impact of
ovarian cancer on their lives
as reported by patients was
5.69
On the same 1 to 7 scale, the
average perceived impact of
ovarian cancer on patients’ lives as
reported by caregivers was 6.35
75%
57% 52% 50% 49% 47% 45% 44%
26%
5%
0%
20%
40%
60%
80%
100%
Physical fitness Ability to work Ability to
complete
household
tasks
Finances Social life (e.g.
ability to go
out)
Romantic
relationships
Relationships
with friends
Relationships
with family
members
Other None of the
above
Life Areas Affected by Ovarian Cancer

21.
THIS DOCUMENT IS CONFIDENTIAL PAGE 21
Perceived Impact of Ovarian Cancer on Caregivers
• 85% of ovarian cancer patients responding to the
survey indicated that they have a family member
or friend who helps them manage their condition
79%
43%
38%
32%
4%
0%
20%
40%
60%
80%
100%
Spouse/partner Friends Other family
members
Adult child Other
Who is a caregiver?
Patients and caregivers also have varying opinions on the
impact of ovarian cancer on the caregivers’ lives – while the
average perceived impact reported by caregivers on a scale of 1
to 7, was 6.17, patients indicated it was lower, 4.56, on average
Patient
Perceptions
Caregiver
Perceptions
35% Social life 50%
17% Relationships with
family members
47%
18% Relationships with
friends
30%
23% Ability to work 41%
31% Romantic
relationships
34%
35% Finances 31%
12% Physical fitness 32%
14% Ability to complete
household tasks
19%
27% Other 43%

23.
THIS DOCUMENT IS CONFIDENTIAL PAGE 23
Information Sought by Ovarian Cancer Patients and
Caregivers
• Overwhelmingly, when those with ovarian cancer or their caregivers turn to any of the previously reviewed
sources of information, they are looking for either treatment-specific information or information about the
disease itself
9%
9%
11%
21%
22%
24%
83%
86%
0% 20% 40% 60% 80% 100%
Other
Insurance reimbursement support materials
Information on pharmaceutical-sponsored, patient support
programs
Information on patient support groups
Support materials for family members/friends detailing your
condition and its symptoms
Tips/tactics around better ways to communicate with your
healthcare providers
Disease-specific information
Treatment-specific information

25.
THIS DOCUMENT IS CONFIDENTIAL PAGE 25
Ovarian Cancer Treatment Priorities
• While nearly 1/2 of respondents indicated that living longer was the most important treatment
outcome, patients and caregivers also ranked stopping disease progression high on their list
Most Important
Live longer 47%
Stop disease progression 20%
Minimize the risk of disease recurrence 15%
Have a better quality of life 14%
Slow disease progression 2%
Be more active 1%
Minimize treatment side effects 1%

26.
THIS DOCUMENT IS CONFIDENTIAL PAGE 26
Benefits of Belonging to Inspire’s Ovarian Cancer Support
Community
• Getting information about ovarian cancer is perceived to be the top benefit(s) of belonging to
the Inspire ovarian cancer support community
5%
7%
47%
53%
54%
57%
66%
78%
0% 20% 40% 60% 80% 100%
None of the above
Other
Providing emotional support to other patients
Learning about ovarian cancer clinical trials and treatment
options
Answering questions and participating in discussions with
other patients
Receiving emotional support from other patients who
understand what I'm going through
Being able to ask questions that other patients can answer
Learning tips, resources, and other information that helps
me manage my ovarian cancer